Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

When many years ago our son, Peter, was in Sick Kids with an acute kidney and blood infection, my wife and I took turns staying with him night and day. I remember leaving the hospital on Easter Sunday and looking up at the window of his room on the seventh floor and realizing that that room was now our family’s home. And opening the front door of our house twenty minutes later felt more than a little like entering a hotel.

No doubt the experience would have been different and even more complicated had there been another child at home. Still, my experience since then with other parent volunteers at SickKids and elsewhere suggests that what struck me that Easter—that we were now living in the realm of paradox where contradictions and seemingly incompatible realities sat side by side—has marked the lives of most of us. We had unexpectedly found ourselves in a place where we were, among all the various people and professions at the hospital, both least at home and most truly at home.

Peter was never a patient in the NICU, but I can easily imagine that the paradoxical situations in which we found ourselves, e.g. wanting to move him just a bit to find a more comfortable resting position but fearing that this might cause him only pain or disconnect him from something to which he absolutely needed to be connected, must be even more common and acute in the NICU. I wanted very much to be a competent father—and I could see and feel that Peter wanted me to be just such a father—but initially I didn’t even know I could unplug the IV pole and thus carry him, squirming in pain, much more safely to the washroom where I could perform the one task I had been assigned: collect and measure his “outputs” every hour or so through the night. For the first few nights I was next to useless.

Paradoxes abound for families, both in and out of hospital. We simultaneously feel full of hope and close to despair and are alternately resilient and exhausted. Capable of absorbing and applying lots of complex new information one day, we are barely able to make sense of simple instructions the next. Parents and children often labeled as and then expected to be “heroes” find themselves acting or thinking in ways far from heroic. For many, the impossible dream is to live utterly ordinary lives.

Perhaps the hardest paradox to come to terms with is that wonderfully rich, sometimes enduring, and even humour-tinged relationships—with nurses, doctors, therapeutic clowns, respiratory therapists, and, not least, other parents—often grow, directly or indirectly, out of our own and, more to the point, our children’s most painful experiences. Sometimes one parent of a child seeks out or simply finds himself or herself in such relationships while the other parent does not. Another paradox? Or maybe just the simple or not-so-simple consequence of differences in personality.

There are, of course, grimmer, more profound, and more intractable paradoxes than the ones I have described and referred to, paradoxes certainly familiar to all who have spent time in level three NICUs. They elude understanding and even, perhaps, imagination. Still, all of us—healthcare professionals included--would do well to recognize and attend to the paradoxes we and those around us live with and through. We’ll judge (ourselves and others) less and understand more.

Frank Gavin teaches English at Centennial College in Toronto and serves as one of two public members on the Canadian Drug Expert Committee of The Canadian Agency for Drugs and Technology in Health, a body that recommends to public drug plans which drugs should be listed. This essay was written in response to a request from the editor of the
Linden Fund newsletter to write about paradox, a topic Frank touched on in his presentation to parents from three Toronto NICU groups in November 2011. Frank was a co-chair of the Family Advisory Committee at SickKids and the founder and chair of the Canadian Family Advisory Network. He received the Volunteer Humanitarian Award at SickKids in 2002 and the Contribution to Child Health Award from the Canadian Association of Paediatric Health Centres in 2008.

The poster for "Fathers' Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care" has been accepted at the Hospice Palliative Care Ontario 2012 conference.

Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.

Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.

In November, Ashley Weinhandl with the Ontario Hospital Association and health writer Colleen Young interviewed Janice Nicholson, Senior Manager of Strategic Communications at SickKids. Janice has taken on the exploration and launch of social media at SickKids over the last few years and here are a few snippets related to social media. See the full interview where Janice talks about what channels the hospital chose and why and describes the Upopulis platform. In a nutshell, social media use at SickKids is about providing trusted and consistent information, receiving feedback and listening to the conversation.

Ashley: Tell us about your experience. What unique learnings have you encountered?

Janice: I’ve learned that it’s important to manage expectations about social
media. It is not the solution to all of our communications challenges;
it is simply another tool in our tool kit. I also have come to believe
that to have a real effect in the social network, we need to have a
coordinated approach. We have a strong brand and to maximize our voice
and reach our audience on channels like Twitter, we need to maintain one
brand. By having too many voices out there we end up splintering off
into smaller channels. If we maintain master accounts, we can share the
messages of all of our SickKids family through one voice and reach a
wider audience. The key is to target those messages using keywords and
hashtags. There is a lot of interest in embracing social media at SickKids, but
we must manage expectations of who is using social media at SickKids
and how they will represent our brand. We are taking a phased approach
and now that we have taken the time to listen and are beginning to
establish a voice, we are on to the next phase. We plan to continue to
build as we start to engage our staff and stakeholders and help engage
them in the conversation....Ashley: What one piece of advice would you give other institutions for community building?

Janice:
Get involved with social media as fast as you can because if you’re not
there they will still be talking about you. Being there allows you to
know what is being said so you can respond accordingly. Since it’s free, it is a great tool for not-for-profit and publicly
funded institutions. The important thing to remember is that you are
entering a channel that moves at a crazy speed and you need to be
extremely responsive. So while it is free to use, it requires resources
and an investment of time and strategy. There are resources required and
you have to take it seriously and have a plan.

If you are interested in patient and family engagement in safety or other areas of health care, this looks like just the webinar and it is free registration.

Improving Patient Outcomes and Experience: How to Include the Patient and Family

The Agency for Healthcare Research and Quality tells patients that
"The best way you can help to prevent errors is to be an active member
of your health care team. That means taking part in every decision about
your health care. Research shows that patients who are more involved
with their care tend to get better results.” The Joint Commission
encourages patients to be active participants through its SPEAK UP
Campaign.

Unfortunately, the public mostly learns about patient safety through
negative media stories. This thought-provoking presentation will teach
you how it can be celebrated and how to encourage the patient's family
takes some of the responsibility for safe care. Through storytelling and
comparisons, Ms. Corina will leave you eager to include your patients
and their families in patient safety.

But what exactly can the family do to be part of the team? How can
they better understand their role in the patient's safety such as
reducing falls, medication errors and hospital-acquired infections?
Attend this webinar to learn how to communicate with families to make
their presence work for you.

Participants will learn how to:

Talk about patient safety with patients and their families to help ensure the best outcomes

Get tips to develop a Patient Safety Advisory Council in your facility and learn how to choose the best representatives

Presenter

Ilene Corina, President and Founder of PULSE of New York

Selected as one of Modern Healthcare’s 100 Most Powerful People in
Healthcare of 2009 and a Fellow of the AHA’s Patient Safety Leadership
Training, Ilene Corina is a nationally recognized advocate for patient
safety. She is the president and founder of PULSE of New York, a
grassroots patient safety advocacy group that was formed in 1997. She
runs support groups for survivors of medical injuries and develops
patient safety programs for medical professionals and consumers of
healthcare.

Ms. Corina has appeared as a patient-safety expert on CNN, Fox News
and other television and radio news shows, and is a popular lecturer and
author. She discusses the patient’s role in patient safety and the
changing culture to form partnerships to improve outcomes. She also
helps healthcare professionals work with patients and their families
after a medical injury or death has occurred, and has developed
curriculum on disclosure of medical errors.

Ms. Corina is a board member of the Joint Commission and the National
Patient Safety Foundation, and has won numerous awards, including the
2010 MITSS HOPE award, presented by RL Solutions.

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.